Growing up I was always told:

“What you want and what you get are two different things”

I never realised how true this saying is. Not until I started living with M.E. Nowadays this saying sums up most of my life. I want to be healthy, lead a normal busy life. Instead I’ve got M.E. which doesn’t care what I want, I have to do what it wants or else.

I’ve already done a post on my reality at 21 and I don’t want this to become a repeat of that. Instead I want this post to be a more positive take on things. The way I try to live my life; focusing on the positives and developing from the negatives. I may not have all I want but I make the most of what I get. Some examples:

  • I want an unlimited supply of energy. I get a very limited supply. But that means I prioritise what gets done; sometimes this means anything that can be done wearing pyjamas is done wearing pyjamas!


  • I want a normal range of mobility. I get reduced mobility. So any aids I use have to be prettified like a fashion accessory. A patterned walking stick. Coloured parts of my crutches. Pretty cushions for my wheelchair. That kind of thing.


  • I want to be completely independent. I get a little independence on my ‘better’ days. Small things can be done independently; thanks to a water dispenser I can make a hot drink myself, foam curlers on my toothbrush handle mean I can clean my teeth, a tangle teaser brush means I can brush my hair. This all varies from day to day but without things like that I’d have to rely on others to do these things and more for me. Independence means a lot to me. One day I’ll be able to walk to the local shop on my own again.


  • I want to spend time with a lot of friends. I get to spend a limited time with one friend at a time, generally in a quiet environment. But we always have fun. And then there’s all the wonderful friends I’m in contact with constantly online, despite not having met in person.

Do you see what I mean about what I want and what I get being two different things? My list of wants extends far greater than that, and I’ll grant you there are a few superficial things on that list but most of it, most of it is just everyday things people can do. Things that ME has taken away from me.

But saying that ME has also given me a lot of things. I’ve discovered things about myself I didn’t know. Thanks to ME I’m stronger, wiser, more appreciative and probably more understanding than I would’ve have been without it. I’ve learned I’m strong enough to deal with whatever this illness throws at me, even if I don’t feel it at the time. I do things that seemed impossible at a certain point in my life. I’ve become even more determined than I used to be. Determined not to let this illness beat me!

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